Transplant and Pulmonary Hypertension

Now That I am Listed, What's the Next Step?

In a word, the next step is waiting. During this time, it will be essential that your transplant team be able to contact you should an organ become available. Many transplant centers give transplant candidates pagers in case they cannot be reached by phone. During the wait period, you must follow all instructions from your transplant team regarding communication, and must develop a plan for being transported to the transplant center when a donor organ becomes available.

Physical Preparations

The waiting period is a good time for you to make sure that you are in the best mental and physical shape possible to increase your chances of transplant success. See the section below on mental wellness during the waiting period. In terms of physical wellness, the two key components are nutrition and exercise. The stronger you are going into the surgery, the better your body will be able to cope with the stresses that the transplant operation entails.

Good nutrition is essential during the pre-transplant period. You should continue to follow the low-sodium diet suggest for PH patients. (For tips, see the Low-Sodium Diet fact sheet.) Your transplant program may also have a requirement that you are within a certain percentage (either above or below) your ideal body weight and you should work with your doctors to establish a diet plan that will help you achieve this goal.

While exercise may be difficult due to decreased lung capacity, you may be able to do some exercises to increase your body's strength and endurance in preparation for the surgery. Being in better physical shape will not only increase your chances for a successful transplant, but will make the recovery easier after the surgery is over. This is something you should talk about with your transplant team.

Because being in the best physical state possible is important prior to transplant, you must contact your transplant center if:

Legal Preparations

In addition to these physical preparations, there are some other considerations you must take prior to transplant. Though your transplant team will do everything possible to ensure the success of your transplant, it is possible for transplant candidates to become critically ill before, during or after lung transplant. Should this occur, it will be helpful if you have already established an advanced directive and a durable power of attorney.

Adults ages 18 years and older who are considered mentally competent have the right to make decisions about their medical treatment. If you want to control decisions about your healthcare, even if you become unable to make or express these decisions yourself, you will need an advanced directive. An advanced directive is a written document in which you state what medical care you would want in the event that you lose the ability to make decisions for yourself.

Durable power of attorney means that you name someone to make your medical decisions for you if you later become unable to make or express these decisions yourself. Power of attorney is assigned through a legal document in which you name the individual and say what medical treatments you would want and which you would not want. Should you decide to name a power of attorney, you should choose someone who you trust and share your wishes with the person before putting them into writing.

Language Based on Treatment Fact Sheet Issued by PHA's Scientific Leadership Council

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.